Friday, June 5, 2009

A Blossoming Lily.

I love Lily's new hair. It is so soft- I sit around and pet her. Fortunately she doesn't mind and I usually get a hug out of it. It's still sticking straight up and blonde. She also has been wearing her hearing aids nonstop for the past few days. It has been great. She seems a lot less frustrated. Last night she pulled one out before bath time and it came apart. I almost lost my mind. Not even a week. YHGTBSM. Ugh this means a call and a trip to Tripler, and we just spent the afternoon there. I look at it- I don't think I can fix it. I call Phil- of course I imagine him in the bar, couple of beers under his belt so he is calm and rational and he tries to calm me down- she's 4- there's gonna be a learning curve says the rested parent. Lily takes her bath and is sitting there watching tv and losing her mind- she wants to hear it- she can't just wear one- she wants both- so I shove the 2 pieces back together and miraculously they stick and it seems to be working. Add Hearing aid mechanic to my list of possible occupations when I recover. She starts complaining of the waterfall sound. I am starting to stress this means the aid is still broken and she's hearing feeback- she keeps turning her head from side to side- finally she points at the oscillating fan- THAT'S IT! That's the waterfall sound! I turn it off and that makes it all better. Phfew!

After Lily's last appointment her bipple, as it is called around here- was very irritated. She is sensitive to the adhesive and there is usually irritation- so I make a mental note and file it away. This past weekend I notice the redness has gone, but she seems to be swollen- It may just be her port which is less than an inch away(and has often been referred to as her 3rd bipple)- 2nd mental note, filed away. Then on Tuesday she had a dress on- I could see her lil nubbin poking out- oh mother b*&#!. She is just starting to wear clothes again. That's the 3rd notice- this needs to be investigated. Ugh. I ask her if her port bothers her- nope. Can I touch it? Are you gonna give me a shot? No. Sure then, you can touch it. So I feel around- the port seems intact- it doesn't feel like a hard cyst, it feels like a little lump. Under her bipple. There was much surprise early on that she had not started to develop- but I wouldn't expect one nubbin to come in- I would expect symmetry. Supposedly we also have killed off the adrenal glands and hence their ability to produce these hormones. I have that pit in my stomach. Why couldn't I have noticed it when Phil was home last week- or in a few days when he gets home. I'll sit it out and see what he thinks when he gets home. I'm not gonna tell him, he will come home- as much as I want him home- I need for him to have a job. I spend days randomly bursting into tears and battling anxiety attacks- when we are out and about- it's all I can do to not burst into tears when someone asks me how she is doing. I don't want to be the hypochondriac parent that medical professionals don't take seriously, but I also don't want to sit on something that needs to be fixed. I finally decide having it looked at by her doc is better than waiting. I call and Florence immediately recommends bringing her in. We almost made it 2 weeks.

Dr. K is absorbed with another patient, so we are stuck with a resident until she gets there. I could be hanging around waiting- instead I get to recount her medical history with a resident who I think probably has a personality in there somewhere if he would just loosen up. And then it occurs to me- this is the resident that Phil had words with about waking us up at 4am. Now it's just amusing to watch him squirm. I hope he doesn't choose peds as his specialty- but maybe he can be trained. The upside was that when Dr. K finally got there- he was instructed to show Lily how to play xbox so we could talk- the guy has now been adequately punished. Of course my heart only skipped like 8 beats and I must have gotten pale because she immediately says- I think it's just breast tissue. Oh just breast tissue. That's all. In a 4 year old. No biggie. UM- does anyone else have a problem with this? If she's starting to get nubbies- then other things could happen- and although it would TOTALLY explain the moodswings- I am not equipped for my own monthly battles- how on earth could a 4 year old be expected to- yeah- um no- what are we going to do about this?

Of course the endocrinologist is out for the week- because she would be our next stop. So a call is made to radiology to see if an ultrasound would help rule out tumor tissue- and of course the answer is no. Breast tissue is too fibrous- that's why U/S is not readily used for monitoring the breasts-probably not much more success with MRI and something that size- a surgical consult is best. Dr. K calls Dr. E directly and she says send her on up- one question though- Is she wearing clothes today? Oddly enough Dr. K tells her- she is. Off we go.

AS I walk up to the surgery clinic desk- I realize that we don't have an appt. This is totally going to be a problem. Receptionists do not respond well to-"just call the doc" so I try to convey what
I want. I get the "smile" and " well, it could take some time for the consult to come through and then I have to make an appointment- remind me in 15 minutes to check" Oh good lord...we have a seat as instructed and I am trying to find a signal to call Dr. K when I hear Dr. E asking if Lily is here yet. God I love that woman. The receptionist says she is waiting for the consult to make the appointment then she'll send her back- Dr. E laughs and says"there won't be a consult coming, we don't really need to make an appointment, do we? I'll just take her back real quick- it's just a visit." Sigh- snip snip computer tape.

Lily is pushing the umrella stroller with pooh in it and runs at full speed down the hall. She apparently owns this clinic as well because everyone stops to say hi or give her five. I repeatedly remind her to walk as she cruises by the exam room. Lily has figured out why we are there and has her shirt up over her head before she even settles on the exam table. She is giggling hysterically because this will be the 3rd time today she's been felt up and she seems to enjoy it- ugh- mental note- have talk with Lily about who is allowed to touch her. Dr. E immediately smiles- I am pretty positive it is breast tissue. There are no hard spots- it's centrally located- I would highly recommend against biopsying it- in fact I would not biopsy it at this point. The reason is that when breast tissue comes in- all the tissue you ever are gonna get- is in that "bud" if you biopsy it- you will end up with a severely deformed breast later. I think we should limit deformity at this stage of the game. I do not like that my 4 year old is getting nubbins, but radical mastectomy at this point isn't called for either. She reminds me that my 4 year old's body thinks it is 7 and with all the exposure to hormones from the tumor- this is not entirely unexpected. How to proceed is back in the endocrinologist's court. I suspect we will be adding a repertoire of medications to our regime to postpone these changes for awhile. Mostly though I am still relieved that it's not a tooma. Even if it means our Little Lily is starting to bud. Ick. I can hear it now- Kiera when she notices(and she WILL notice) MOOOOOM!!! Why does Lily get boobs before me? ...Well dear, she's an overachiever- do better in school and you might get some too. hee hee hee.

1 comment:

  1. Oh Jen! Only you can end the blog in such a hysterical fashion--I'm LOL thinking that Alyssa would totally respond like Kiera!! She's already waiting for puberty. Hmm, wonder what the rent would be like for some sort of dungeon for all our girls if we went doubles on it??


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)